Posts Tagged ‘"ports"’

Well, it has been more than 24 hours since my first infusion of Taxotere and Cytoxin, my personal medical recipe for Chemotherapy, and all is still well. I had a good nights sleep, woke up really hungry, had breakfast and coffee, and still felt well! This morning I actually gave myself an injection (yes, that is with a needle) of “Neulasta” , a drug which is used to stimulate the bone marrow to make more white blood cells. According to my medical literature, “chemotherapy may reduce the body’s ability to make normal white blood cells, and thus fight infections”.

Also in my IV last night (in addition to the “anxiety medication” ) was a long lasting antidote for nausea, which is supposed to last for 3 to 4 days. So I am going to start crossing all my fingers and toes on Sunday, plus I have a ‘script for meds specifically for nausea and the number for Jane, my nurse practioner extrordinairre, along with her “pager’ number. I have been told to take the drugs at the very first queasy moment, and then call them if I start to “hurl”. They want to know! Cool! At U of M puking is serious business to be avoided, and I have been assured that if it becomes a problem, they care, have other drugs to try, and will work to fix it.

Another side effect I’ve been told to expect is fatigue…..well, that has been a companion for awhile now, and that one is fairly easy to fix. Although when I took a long nap a few days ago, Louie woke me up with the fascinating news that he had just learned how to make a stink bomb with a tennis ball, lots of dog hair, and a sparkler for a fuse! Thanks a lot YouTube! So now I am a little wary with this sudden interest grooming Kia, the dog……..

Now, “chemo-brain” is a more elusive potential side effect the medical professionals address more warily…….they suggest that it is fleeting for some, nonexistant for others, and perhaps an extension of one’s typical “space cadet” status…. Oh dear. I have to write lesson plans for 18 weeks for two new classes I am teaching next year. I feel added pressure now to get to it, before any of these side effects intensify…….which apparently all have the likelihood of culumitive annoyance…..the longer on chemo, the worse the side effects get.

But, at this point in time, these are only my “worries” not my realities. I will follow the directions of the nurses, number one of which is a minimum of 15 minutes of exercise a day. (Cool-Paula, are you listening? That means a walk tomorrow morning!)

BTW, my hand where the IV went in, is still beautiful. Dr. Schott, you were right, your nurses (in this case, Nurse Nancy) are very very good!

Funny thing that happened yesterday at the Cancer Center. Suddenly I felt kind of luckey….a lot of people who appeared to be younger than me, looked to be a whole lot worse. And then there were the children with pretty little bald heads. Then you know getting cancer is just something that happens. It is my job to get over it, and work to help educate others and support those who support us.

Here it is Saturday, and I have been working on this post since Tuesday. Quite a long time because I am so……confused?….no, that’s not the right word. Conflicted? No, that’s not it either. I want to be able to make an intelligent decision based upon facts and I am stuck in “emotion”. I know what my heart wants to do, but I am so concerned about making the correct decision, because well……it all comes back to desperately wanting to see my kids graduate from High School. It is so easy for others to cheerily reply…..”oh, you will!”…….and I think that might be true, but I don’tknow that. These are the “tear-jerker” thoughts I have at a moments notice.

Wow, how interesting it was to go to U of M on Tuesday and listen to a whole new version of a viable “treatment plan” for my unique cancer case. I don’t mean to make my personal pack of terrorist cells sound like they are something special or anything. (Well, they are kind of special to me, even though I intend to kill them). At University of Michigan, the Breast Care Center is quite a big place. Lots of breast cancer walks out of the elevator doors there. I felt like a sick chick suddenly opening the doors to the Cancer Land of OZ.

My experience at the Breast Care Center began with a review of my history, a brief physical examination, and Dr. H (a “resident”, I think) brought up a website called “adjuvantonline” which has statistical data to help an Oncologist discuss the “rate of recurrance” of cancer, or the “mortality rate” with your personal information plugged into the program. Then they enter data of different types of therapies and get a bar graph that demonstrates the risks/benefits of each therapy for you. I know some are skeptical of this site, but if a major medical/research facility uses it, it’s good enough for me.

OK, the whole motivation to go to U of M was to get a “port” placed in my arm for delivery of chemotherapy meds. Imagine my surprise when Oncologist/Internist Dr. Schott said, “No…you don’t need a port.” I was stunned. What I had taken as acceptable reality in Toledo was kind of “old school” at U of M. Dr. S recommends four treatments of chemo three weeks apart. Only four treatments? Yea, only four treatments. Not enough to have the inconvenience of surgically inserting a subcutaneous port. The ports make it easier for the nurses to administer the meds but also have risks of their own, as well. She assured me that the nurses at U of M are very goodat what they do, and they will be able to find a vein sufficient enough for chemo meds, and no, they won’t “collapse” my veins and yes, it will be all right, they do this all the time with women my age and older.

The most significant difference between Toledo and U of M? In Toledo, I have Stage II Carcinoma, at U of M, I have Stage I carcinoma.(**see note at end of post) Wow. Big difference. I could give more examples of differrences between the two places like, recommended behaviors, suggestions for short term planning, etc. …but the staging of the tumor? Well, that really muddies the water. I have been evaluating my records from Toledo to try to figure out what grading scale was used, U of M indicates the Scarff/Bloom/Richardson grading scale. I have read and researched, and I honestly don’t know which place is correct.

Of course the “stage” of your cancer is vitally important when determining the adjuvant therapy (nice way of saying chemo-poison and other drugs) most appropriate. Here there is a significant difference in “suggested method of treatment” (I word it that way, because the Oncologists I have met have been very careful to provide a choice, and not be too pushy about which of the two is better.) In Toledo, my Onco-man has suggested a TAC regimen. This means: Taxol, Adriamycin and Cytoxan for six treatments, three weeks apart…about 18 weeks of chemotherapy, followed by “hormone” therapy, to block estrogen and progesterone I still naturally produce (my cancer “feeds” on estrogen and progesterone.) At U of M, the suggestion has been to infuse Taxotere and Cytoxin in four treatments every three weeks….about 12 weeks of chemo, followed by “endocrine” therapy (same as hormone therapy, but a “more accurate” term). Notice U of M leaves out the Adrimycin. Funny thing about Adrimycin…it has a nasty side effect of “potential heart damage”. When Dr. S explained a potential chemo mix that included Adrimycin, it only decreases the rate of recurrence within five years by 2%. What would you pick? Take the drug with the potential of damaging your heartmuscle, or, a 2% better chance of no recurrence of cancer in the next 5 years? I have ten more years before Charlie graduates from High School. Sigh……….

Of course, that intellectual dilemma takes me back to the question of “Stage”. If truly a stage II cancer, perhaps a more aggressive approach will get me to the goal. Maybe I’ll be lucky and not have the “side effect” of heart damage. Then I think about the No 1 killer of women……of course, heart disease.

**Revision (6/15/09) I need to add an updaste to this post. From my first visit to U of M, I discovered that I misunderstood some information that was presented to me. The Pathologists at U of M did indeed list my cancer as a Stage 2 cancer. (I misunderstood information about the “grade” and “stage” of the cancer.) Once I had made a second call to the nurse practioner who assists my oncologist, she patiently explained all relevant information to me not once, but twice. This small experience goes to show you that even when you think you have fully understood everything, took notes, etc. there can still be misunderstandings. It is SO IMPORTANT to ask questions, and don’t settle for an answer you do not understand! It is your life and you deserve to be fully and completely informed!

Wow….life has been ticking away at quite a quick little clip that I haven’t had a chance to post any comments…and things have been looking up, too. I think the last thing I wrote was some silly little wishy-washy-worry-wort mess.

Since last Friday when I was concerned that I had made too quick of a decision on treatment options post-mastectomy, I have worked the phones quite a bit, talked to lots of Doctors, Nurses, insurance people, and schedulers, and now I have an appointment at University of Michigan next Tuesday for an evaluation/second opinion on treatment options for BC post-surgery. This, I am extremely happy about!

And to think, all of this has been driven by the lowly “arm-port”. The “port” is the delivery system by which one receives the poison that is known as chemotherapy. And the mix of caustic drugs is best delivered directly into the superior vena cava, the biggest vein going into the heart, where the drugs are swooshed around and diluted with a bunch of other blood before it is delivered to the arteries and then out into the the rest of the body to look for any cell that might be dividing…..like hair cells, fingernail cells, skin cells, and also….cancer cells. Then each drug in your chemo mix has a different function, but together they seek to kill those dividing cells. So….losing your hair as a result of chemotherapy is a “good thing” it shows that the drugs are doing their job! (This is my new perspective and I’m going to stick with it!!) But really, the more research I have done, the more fascinating it all is.

So this week has been busy with gathering records, doing lots of thinking, all the while preparing for a couple of brief appearances at school to see the kids, and let them see me…see that I am looking good, and I’ll be OK.

My next post is going to tell you about the MAGIC that occurred at school, and why I now really know that I have the best job ever. Right now though I have to get ready to pick up records at Dr. B’s office.

So, remember my last post how I had so easily come to a decision about the chemo plan? Well, I have changed my mind a bunch of times since then. Since I found out my cancer surgeon will not put a “port” in my upper arm, I have decided to pursue another option to see if I can get this procedure at U of M (where my onco-man suggested it is currently being done.) I have spent hours on the web and on U of M sites in the last day, and I think I am ready to cancel the pre-op appointment coming up this Thursday at St. Anne’s (in Toledo).

Now, I just have to be sure Medical Mutual will allow me to travel for this procedure……and since I am doing that, I think I want a second opinion on the chemo plan too. I can hardly believe I am saying that. I’m worried that I am making a big decision too quickly. I’d do more comparison shopping for a pair of shoes than I have for chemotherapy. That’s a sobering thought.

I’m worried about the insurance, worried about the “port”, worried about the “plan”, and worried about my kids. All the while, I keep thinking I should really try to have a good time now, before “chemo” starts and the likely nasty side effects decide to cozy up insidemy little ol’ body.

Well, yesterday, after a week of great internal fear and debate I amazingly, easily came to a chemo-decision. By the time I left for the appointment with Dr.Mowat (the oncologist….I have taken to calling him my “onco-man”), I had a page full of questions and a briefing sheet for him.

The “briefing sheet” had a photo of my family this past Christmas at the top. In big red letters I pointed out each person: Kay-Lynne is 50. Lou, her husband is 10 years older. Charlie is only 8, Louie is 10 and has special needs. KayLynne needs to live at least 10 more years to get those kids through HIGH SCHOOL, and they must be good years, too, not sick. Then I outlined what I thought were the important stats from my Pathology report like the tumor size, hormone positivity, lymph node involvement, etc. You know, just to have all the facts there and obvious. Of course I assume onco-man knew all of this already, but I guess I just wanted that color family photo and document of patient involvement in my file.

My decision is to choose the more conservative route of therapy, the TAC chemo cocktail for 6 rounds in 3 week intervals. I will still need hormone therapy (to block my hormones because my cancer is estrogen and progesterone positive) and I may choose to participate in a clinical trial for that. I’m going to research that trial over the weekend and make a decision on Monday. If I don’t choose the trial, then it’s Tamoxifan for me.

NOT any “port” in a storm.

Well, I think I may be stirring up a little storm today with my cancer surgeon who is scheduled to put a port in my body to make the next 18 weeks of chemo easier. Her method, like every other doctor in Toledo is to place the Port in the chest. Let me tell you something about my skinny cut-up chest. It doesn’t want the port. My chest is stretched skin (to make up for the loss of skin) big scars and one side “expanded” to 250 cc’s. So the skin on both sides of my chest is tight, hurts, and would like no more scars.

Onco-man told me about a method they are using at U of M where they place the port in the upper arm and women love it. It is one less stress to their chest area, one less scar, too. Wow, did that sound good to me! When I went on line to research this…..only confirmed my thoughts. If there are any complications with a port in your chest, the equipment is so close to your heart….infections can be very bad, parts of the port can fall off and travel….ummmm to your heart. At least if you have a problem with a port in your arm, there is a little distance there, an infection, while serious, may not spread so quickly to the traumatized areas. So this is my next fight/decision/delimma. The Port issue. How do I get what I want in Toledo? Is there a “Port Authority” for this kind of thing?